Autism At The Grocery Store

A couple of years ago, I read a blog post describing the challenges a parent of an autistic child faces at the grocery store (Dear Shopper Staring At My Child Having A Meltdown In The Grocery Store). It’s a fantastic post and accurately described the experiences I had when Marvin was younger. As my son grew up, as he learned his coping strategies, as he got more used to the world around him, our grocery store experiences changed. The sensory overload doesn’t happen anymore, but by the time Marvin was in upper elementary school, we had other challenges. Marvin, at age 10 or 11, was completely oblivious to other shoppers and their carts. So I would say what every parent says. “Watch where you’re going!” And he would stare intently at the floor and other shoppers would have to swerve to miss him. “Watch where you’re going!” “I am!!” was his standard reply and I got very frustrated. I finally realized that he WAS watching where he’s going. Literally. He was staring at the floor where his foot was going to step next. So I changed what I said to, “Watch out for other people.” Then he would swivel his head around, looking at other people as he nearly crashed into them. “Watch out for other people and make sure you don’t run into them.” This was perhaps the most nerve-wracking thing he’d ever done. It was like watching a game of chicken. He would walk towards others and turn aside at the very last second narrowly missing them. So my helpful warning sentence had gone from “Watch where you’re going” to “Watch out for other people and make sure you don’t run into them or get in their personal space” accompanied by an explanation of what ‘personal space’ is. This was not something I could quickly call out to help him avoid a collision. I also couldn’t guide him from behind with a hand because he hates being touched and jerks away, often getting more in the way of others than he would have if I’d left him alone. For quite a while, every time I took him into the store with me, we would have a little chat before going inside. I would ask him, “What do I mean when I say, ‘watch where you’re going’”? He usually had to think about it before answering.

It is very difficult, but very important to remember that my kid wasn’t doing any of these frustrating things intentionally. He takes everything literally. He can’t help it, it’s how his brain is wired. Figures of speech, sarcasm, unwritten social rules – all of these are concepts that he has lots of difficulty with. It is incredibly frustrating. Not just for me, but for him, too! He tries so hard to obey and just can’t seem to figure out what I want. I often wonder what passers-by think as they overhear some of the conversations I have with him. The things I often find myself saying are very strange. But very necessary. You see, I’m trying to expand the way he thinks in addition to changing his behavior and that takes a lot more energy and explanation. Sometimes he fights me. Sometimes he doesn’t understand. And sometimes he gets it. And those times are wonderful even if he forgets and I have to start all over the next day.

Marvin is 13 now, and the grocery store is still a challenging place. The challenge now is driving the shopping cart! It would be so easy for me to just leave him at home and grocery shop by myself. But I realized that there was an incredible opportunity here. In three years he’s going to want a driver’s license. But one of his greatest difficulties is paying attention to what’s going on around him, which is a problem when behind the wheel of a car. So, Marvin comes with me to the grocery store, and drives the shopping cart for me to help him learn how to be aware of everything around him without the consequences a car accident would bring. We’ve had lots of near collisions with other shoppers. And right now, I’m constantly giving directions, and reminding him to look around. Slow down at intersections, look around corners, stay on one side of the aisle instead of driving down the middle. And I repeat myself over, and over, and over….. But he’s learning! I’ve explained that the shopping cart is an extension of himself, and that he needs to be aware not just of where his own body is, but of where the shopping cart is, too. (He runs into things a lot less often since having that conversation.) Last weekend he had an ‘Aha!’ moment while we were navigating Wal-Mart. I kept telling him to be constantly looking around while pushing the cart, and he was getting frustrated because he thought he was, but his head never moved. I told him that 75% of looking around is so that he knows where others are, but that other 25% was to show the other shoppers that he was aware of them. His eyes got big with understanding, and he finally became willing to move his head around instead of just his eyes.

So, as my kid grows up, we still have challenges, but they change. A trip to the grocery store still takes longer than I think it should, and I still get ‘looks’ from other shoppers, but I am satisfied that Marvin has been making tremendous progress. He used to be the toddler with the ear-piercing scream for the entire shopping trip. I would buy him chicken nuggets at the near-by fast food joint for him to eat while we were shopping. As long as he was focused on eating them, he was calm. As soon as he finished, he was back to screaming. I got pretty good at shopping faster than he could eat his chicken nuggets! Then he was the 5-6 year old that was still overwhelmed by all the stuff, but too big to put in the cart. During that time, he needed to keep his hand on the shopping cart at all times, and he could earn a treat for good behavior. Having a specific boundary (his hand on the cart) kept him contained and close to me, and earning a treat meant there was something tangible in it for him. It didn’t always work, but it did often enough that it was worth doing. Then he became the oblivious 10-11 year old I described above. And now he’s a teenager, and I’m trying to prepare him for driving. As Marvin grows up, the challenges change, but they are still there. It’s important to remember the progress that’s been made, and the challenges that have been overcome. Remembering that helps to give us the strength and encouragement we need to tackle the next challenge!

Posted in Uncategorized | Tagged , , , , , | 1 Comment

A Big Bang Blog

I love the show, The Big Bang Theory. It is one of my favorite TV shows. It makes me laugh, which in my life is pretty important to help me relax and de-stress. I also noticed that Sheldon is a lot like my son. There were times when my husband, Greg, and I would be watching the show, and Sheldon would say – word for word – something that Marvin had said several days before! The show got pretty popular and it became easier to describe Marvin to new staff members at the school – saying he was a lot like Sheldon saved quite a bit of time because it gave the staff a context to start from. They had a general idea about what Marvin was like and we could spend more time discussing strategies and solutions. Then I started telling some of my friends that the show gave me hope for Marvin’s future. My friends thought that was kind of pathetic until I explained – Sheldon has a job, friends, and lives on his own! My friends now refer to that as the Sheldon Cooper Trifecta Of Independence. (I have great friends!!)

When he got to middle school, Marvin began to hear more about The Big Bang Theory, and we would show him little clips that he thought were funny. (His favorite was when Sheldon was in the ball pit – Bazinga!) And then I got an idea. Discussing Marvin’s behavior with Marvin has always been extremely difficult. He takes everything way too personally and cannot be at all objective about his own behavior. I thought that he and I could watch The Big Bang Theory together, and we could discuss Sheldon’s behavior. IT WORKED!!!! We would watch an episode together (my finger on the fast forward button – it is a prime time sitcom after all), and when Sheldon was socially inappropriate, I would pause it and I’d ask him what was wrong with Sheldon’s behavior. Sometimes Marvin could answer correctly, sometimes he guessed wrong, and other times he was as clueless as Sheldon was. It was wonderful! He didn’t feel attacked discussing the behavior because it was Sheldon’s behavior, not his. Even though he did the exact same things as Sheldon, it was enough removed from himself that he didn’t feel threatened discussing it.

It got better. After we’d watched a few seasons together and Marvin was more familiar with the show and the plot lines of the episodes, I was able to bring up Sheldon and ask Marvin to compare his own situation to Sheldon’s, to help him make appropriate behavior decisions. One of my favorite discussions like this was when Marvin was being disrespectful to me.

Me – “Why did Sheldon get sent to jail?”
Marvin (quoting Penny) – “Why do you think? For doing the same crap he always does only this time to a judge!”
Me – “Exactly! Sheldon was extremely disrespectful to the judge and got thrown in jail. Who has more power over your life than a judge?”
Marvin – “Um, You do?”
Me – “That’s right. Do you think it’s a good idea to be disrespecting me right now?”
Marvin – “I see your point.”

It’s been a wonderful tool to use! Watching the show is something that we can do together, that feels like a special treat to him. It’s helped him to see challenging behaviors more objectively than he could before, helping him to understand how those behaviors affect a group. It’s helped me bring up his own behaviors in a safer context; we talk a lot about what Sheldon would do as opposed to what Leonard would do. And last week it helped me to illustrate to him how a particular behavior of his has had me wanting to pull out all of my hair. In trying to get him to act appropriately during church service, he was constantly correcting me, getting hung up on unimportant specifics, instead of hearing what I was trying to teach him. So when we got home, we put on season 4 – The Apology Insuffiency and skipped to when someone knocks on their door.

Leonard – “Wanna get that?”
Sheldon – “Not particularly.”
Leonard – “Could you get that?”
Sheldon – “I suppose I could if I were asked.”
Leonard – “Would you please get that?”
Sheldon – “Well, of course. Why do you have to make things so complicated?”

I told Marvin that Sheldon, as a genius, was smart enough to figure out that Leonard was asking him to get the door the first time. And that Marvin is also smart enough to figure out that I was telling him to be quiet during service.

I know that people with Asperger’s tend to think very literally. And I know it will take extra effort for him to translate neuro-typical speak into Asperger’s speak, but he is capable! And being able to show him a clip like this, that was funny, and that clearly showed this specific issue, is extremely beneficial! He didn’t get defensive, was able to see how ridiculous it got, and how frustrated Leonard was. He was also able to better understand why I was getting frustrated with him. I love The Big Bang Theory!

Posted in Uncategorized | Tagged , , , , , | 1 Comment

A Trip To Dairy Queen

My kid, Marvin, age 13, doesn’t think the way that most people think. And it’s very difficult to explain what the difference is. There’s stuff that he honestly doesn’t seem to understand, and explaining it in the simplest terms possible doesn’t seem to help. There’s what I call a disconnect between what he understands and what is expected of him. Recently, he and I had a situation where this was illustrated perfectly. We were at Dairy Queen, and he wanted to get a dipped cone with his dinner. He was too full to finish it, so he had a partially eaten ice cream cone that he wanted to take home. I told him to go and ask for a small bowl, which he did. Then I told him to put the ice cream into the bowl. He looked a bit confused, but he obediently set the ice cream cone right side up into the bowl. Like this:

1

(Artwork done by my awesome friend, Holly.  Visit her site at http://www.kimchikawaii.com/)

Then I explained that the ice cream part of the ice cream cone needed to be in the bowl. Still confused, he picked up the ice cream cone and the bowl, set the cone on the table and put the bowl on top of the ice cream. Like this:

Holly icecream2

At this point, I realized that I didn’t have the ability to explain this in words in a way he would understand, so I asked him to give me the ice cream cone and the bowl and I showed him what I wanted done:

Holly icecream3

Then he got a look on his face that told me he finally understood and it all made sense to him now.

This example is short and simple, and it’s very clear that he didn’t understand, and I was able to show him what I wanted rather than tell him. There are many other times, especially in school, where it isn’t this obvious. There are some things he just doesn’t understand. And he doesn’t always realize that he doesn’t understand. And his teachers don’t realize he doesn’t understand. So the teacher becomes very frustrated that he isn’t doing what he’s supposed to be doing, and my kid doesn’t know why his teacher is angry with him because as far as he’s concerned, he’s doing exactly what she asked him to do. I hope that sharing this story will at least help others to be aware that this type of misunderstanding is common, and that maybe it will help others to be a bit more patient, and a bit more willing to try to explain one more time in a different way.

But I also hope that sharing this story will make others aware of the wonderful gift this is. Here we have a kid who sees the world in a completely different way! His ideas and problem solving abilities could end up being revolutionary. Imagine him as an adult in the field of engineering coming up with a unique way of building a machine that’s significantly more efficient. Or a mathematician who can solve that impossible equation because it just makes sense to him. The possibilities are endless. I really love my kid. And moments like this help me to remember how hard he tries to obey, and how unique he is. Moments like these give me the ability to have a bit more patience the next time.

Posted in Uncategorized | Tagged , , , | 2 Comments

A Mighty Work

Marvin was diagnosed with ADHD when he was 5 years old.  6 years ago, at age 7, he was diagnosed with Asperger’s Syndrome which is on the autism spectrum.  It was hard.  Really hard.  This is what I wrote as I worked through my feelings about my son and his diagnosis.  Marvin is 13 now, but was 7 when I wrote this:

If we were to look into Marvin’s classroom on a good day, you would note his height – 4 ½ feet tall – and his reading ability – 184 words per minute (average for his age is 80) – and think to yourself, “This boy must be 9 years old, 8 at the very least.” I would have to tell you that he’s only 7 and in 2nd grade. Not 7 years and 11 months either. His birthday is 6 months away. Now we see as the kids line up to go to lunch that another boy cuts Marvin in line. As a parent, you are horrified as Marvin reacts by pushing and hitting this other child. Then when the teacher tells Marvin to go back into the classroom, he says to the other child, “You’re a stupid idiot.” Back in the classroom, Marvin walks to that other child’s desk and throws everything on it onto the floor. If you’re anything like I was before I had children, you’re probably thinking, “That kid’s parents need to start disciplining that child!”

Well, that child is mine. And to further shock you, let me tell you that I see improvements in Marvin during this explosion. First, there was an actual offense made against him that he was reacting to – someone cut Marvin in line – as opposed to a couple of weeks ago when he got suspended from the bus for 3 days. That time he hit and pinched a kindergarten student who dared to sit next to him. Marvin’s only reason then was that he just didn’t like that kid. The second improvement I see here is that Marvin allowed himself to be removed from the situation when the teacher told him to go back into the classroom. A couple months ago he was suspended from school for kicking three different staff members when they tried to guide him out of the school’s construction area when he didn’t want to leave.

I could go on, but I think you get the point. I have a special needs child. This is not a cop-out I’m using to disguise my lousy parenting. This is the painful truth I am finally able to say after 3 years of crying, praying, reading books, trying every discipline technique I’ve heard of, and putting my son in counseling at the age of 4.
It has taken a long time for me to accept my son’s diagnosis (ADHD and just recently, Asperger’s Syndrome). I feel like there should be a 12-step program for people like me. “Hi. My name is Amy and I have a special needs child.” I think it’s hard for most mothers. We want our children to be perfect, and if they’re not, we’ve obviously done something wrong. That is a lot of pressure to put on ourselves, don’t you think? But being in denial about my son’s issues is doing him a great disservice. Not only because it makes it much more difficult to get him the help he needs, but also because I’m not allowing him to be the person that God created him to be.

Well-intentioned Christian friends are sometimes part of the problem. “Whatever you do, don’t put him on medication.” Or, “You should be praying for his healing, not just accepting this for his life.” As for medication, that decision is to be made by a child’s doctors, counselors, and parents. No one else. Praying for healing, however, is a much more tricky issue. I’ve been praying instead for wisdom and insight. How do I help this child learn and grow? What do I need to do to help him understand how to relate to others? How do I help him see in himself the wonderful things that I see? How do I help him overcome the challenges that he experiences daily? There are some really great things I see in my son because of his condition. It gave him the perseverance to put together a 100 piece puzzle by himself before he was 4. The obsessive fixations he gets have helped him to focus and become an excellent artist already. And who knows, maybe the fact that he will have had in-depth social skills training for pretty much his entire childhood will translate into him having a unique perspective on relationships when he’s an adult. I don’t want him “healed” from any of that. Yes it’s hard. Yes it’s challenging. There isn’t a word that exists to describe just how difficult it can be. There are days when I scream. There are days when I cry. But there are also days when I laugh, and days when my jaw drops in awe at the incredible talent that he’s shown us that day. This is who Marvin is. He is God’s creation. It’s my job to help him grow into the man God created him to be, and God did create him this way. Everyone has strengths and weaknesses, my son’s weaknesses just happen to be more obvious to the rest of the world than most people’s. I don’t think that, in this case, he has anything wrong with him that needs healing – his brain was just created differently.

In John chapter 9, Jesus’ disciples ask Him about a man born blind. They want to know whose sin was responsible for this man’s blindness, the man’s own sin, or his parents’ sin. “‘Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the work of God might be displayed in his life.’” John 9:3 Displayed. Out for people to see. Because this man was born blind, an entire community saw God at work. First, Jesus healed the man himself by restoring his sight. Then, everyone who knew this man saw the miracle that he could now see. Then the Pharisees got involved and began their own investigation. This all happened because one man was born blind.

God is good. Always. We may not see how right away. This man’s mother and father must have experienced great heartache when they realized that their newborn baby couldn’t see. Hopes and dreams that they had had for him vanished when they saw his disability. God had other plans. This man has been a witness for God’s power for 2000 years. How could his parents know that at the time? My son is 7. I don’t know what God has planned for him, but I do know that He intends to do a mighty work in his life for all to see.

Posted in Uncategorized | Tagged , , , | 3 Comments

Pot? Meet Kettle!

Why do we as parents (or even not-yet-parents) feel the need to judge the parenting skills of other parents? It seems like I’m constantly comparing myself to other parents, and constantly taking offense at off-hand remarks of others that aren’t even directed at me, but I feel could be applied to me. The most recent occurrence of this was yesterday. A friend posted an article on facebook about bullying. And in the comments, someone stated that kids who bully others learn this type of behavior from their parents, and that their parents aren’t teaching them how to be a good person. This comment, not directed at me, hurt me and I felt the need to respond.

Because my kid used to be the bully.

Because I used to fall asleep at night sobbing and praying that God would give my son compassion, or give me some new insight in how to teach Marvin in a way that he would understand.

But the parents of the kids that my son was bullying didn’t know how hard my husband and I were trying to change our child’s behavior. If you know anything about autism, you know that autistic kids tend to have an obsession. Something that they love so much, it’s almost an extension of who they are. For my son, it was Garfield. What we finally had to do, to get him to understand how serious bullying is, is take away his obsession. Every time he said something unkind to anyone either at school or at home, we would take away one Garfield thing. It broke my heart, and nearly did me in. But after a couple of weeks – and many Garfield items later – his behavior began to change.

You’d think that after dealing with a situation like this, that I would be more compassionate towards the parents of misbehaving children. And I’d like to think that I am. But each time it has to be a conscious decision. It doesn’t happen automatically.

About a year ago I was visiting a friend. And one day, her pre-school aged daughter asked her for a cookie. Well, asked isn’t really the best word to use. Demanded! She demanded a cookie, no, not that cookie, THAT COOKIE!!! And my friend calmly said something like, “alright honey, here you go.” I am ashamed to confess that my first thought was judgmental of my friend’s parenting. That allowing her daughter to speak to her with such disrespect was appalling. Then I remembered. A year before, this child wasn’t speaking. My friend was doing the exact same thing that I have done hundreds of times. Rewarding the baby steps. Because for our kids, baby steps are gigantic hurdles, and need to be rewarded as such. My friend’s parenting was perfect for her child and their situation! My judgmental thoughts were completely out of line, and if I’d said something, I may have lost a great friend.

Recently my husband and I have been trying to convince Marvin to always think the best of others. He came home from school one day saying that someone had put another kid’s notebook in his locker to try and get him in trouble. To make it look like Marvin had stolen it. We suggested, that maybe, someone saw the notebook on the ground, near his locker, and thought it was his, and was trying to be helpful. We told him that if he goes through life always thinking the worst of others, that he’s going to be unhappy. That he should learn to think the best of others, and to give others the benefit of the doubt. I’m going to make every effort to follow my own advice!

Posted in Uncategorized | Tagged , , , | Leave a comment

I’ve Started A Blog

Yes, it’s true.  I’ve started a blog.  Why?  Well, I’ve got this friend who’s been pestering me for quite some time to start one.  She thinks I have something to offer, so I finally gave in and here I am.  A blogger.  Can you call yourself a blogger if you’ve only written your intro blog?

Who am I and why should you read my blog?  Well, my name is Amy.  I’m a stay-at-home mom, piano teacher, and music director at my church.  I’m married to a fantastic guy and we’ve got 2 boys.  (Names will be changed to protect the guilty….)  My husband, Greg, works out of town for half the week and from home the other half of the week.  My youngest son, Wesley, is 10 and a very happy kid.  He’s very smart, creative, and funny.  He is also quite the little chatterbox.  My oldest, Marvin, is 13 and in 8th grade.  He has ADHD and Asperger’s syndrome (on the autism spectrum).  He is very bright and creative.  He has a compassionate heart, and is very good with small children.  But he struggles with impulse control, social skills, and non-verbal communication.  And did I mention he’s 13?

Well, that answers the “who am I” question.  Now, why should you read my blog?  Well, I’ll be writing about my life.  Hopefully it will be funny – I prefer laughing over crying.  I’ll write about having a special needs kid.  I’ll write about my neuro-typical kid. I’ll write about all those little things that become so much more complicated when you’ve got a kid with autism.  And, hopefully, I’ll simplify some of the bigger things that become overwhelming when parenting.  So, I guess you should read my blog if you want to know more about parenting, autism, or how to laugh at the chaos that is life.  I hope that I will be a helpful and encouraging voice to you over the internet.

Posted in Uncategorized | Tagged , , , , , , | 3 Comments